Our New Second Home

They moved us to the Oncology ward in 7 east. Back then, Childrens Hospital was a big, brown, mechanistic building. It was eight stories tall and U shaped in plan. The bottom of the U was the front entrance of the building, facing 34 th street. The two arms of the U were the inpatient wings, east and west. In between was a 7 story atrium. Our first room on 7 east was in an isolation room in the northeast corner of the hospital. It has an ante-room with scrub sinks and two rooms with special hepa-filter ventilation. Spencer was put in there because they still thought he was going to get chicken pox.

South of the isolation rooms was another isolation area with 4 Bone Marrow Transplant (BMT) rooms. These had even stricter protocols on who could enter, what you had to wear, scrubbing, etc. Beyond these were regular rooms. The Isolation and BMT rooms were singles, most of the others were doubles. In the center was the nurses station, residents area, procedure rooms and other support functions. The typical room would have a bathroom when you first entered the room (similar to a hotel, only everything was handicapped accessible) then the two beds or cribs depending on the age and finally a built in couch at the far end that doubled as a bed. The east and south rooms looked out onto the old Civic Center, the west rooms looked out onto the atrium.

In addition to the couch, there were "easy" chairs that fold out flat. That way, one patient's parent slept on the couch and the other patient's parent on the fold out chair. Patient's parents were discouraged from both sleeping over as quarters could be cramped and also to give each of them some time off. Of course, some children didn't see their parents much at all. That was sad. A lot of people were from out of town and either stayed in the parents resource room on the 8th floor or at the Ronald McDonald house.

We were lucky in that we rarely had a roomate. I don't know if that was because of his lowered immune system (chemo will do that to you), or if it was because everyone liked us and worked to get us better accomodations. Still, since we had Jessica to take care of and also since we were both working, Sandra and I took turns. Sleep at home, take Jess to daycare, then to work, pick Jess up, go to the hospital and eat dinner together then spend the night while the other went home with Jessica. Rinse and repeat.

Our doctor was a Hemotology/Oncology resident from New York named Bruce Himelstein. He was a great guy and eventually became a friend. Actually, a lot of the people there became our friends. We went to the wedding of our primary (weekday) nurse, Suzanne. I played in a band with our secondary (weekend) nurse, Connie and her husband, John. Connie is still a friend to this day. And the rest of the staff was really pleasant and comforting. In light of the situations each of them had to face daily, it really is a wonder. With McDonald's on the ground floor, the bar at the Sheraton across the street, and Penn's campus two blocks away, we had all the accomodations we would need for the weeks at at time we would spend at the Children's Hospital of Philadlephia.

Non-Hodgkins Lymphoma is not a children's disease.

Spencer was admitted to 7 West. Coincidentally, that floor is now the Neurology floor where Lauren was monitored and recovered from her brain surgery. Back then though, it was a general admission wing, but directly across from 7 East, the Oncology wing. Spencer's lymph nodes were swollen around his head, neck and chest. The doctors wanted to biopsy one of them, but they were hesitant to sedate him as they felt his breathing might be compromised. To reduce the swelling, they put him on chemotherapy.

Spencer's First Birthday

OK, so as I/we embark on this mission to relive this part of our lives, we are now digging through and searching for reams of information, letters, diaries and reference books to recall what exactly he was on and the sequence of events. Some of the most widely used chemotherapies at the time included Cytoxan, Adriamycin, Oncovin, Methotrexate and usually a steroid like Prednisone. If we find the exact information we will make corrections, but most likely he was put on one or more of these drugs.

After several days on Chemotherapy they surgically biopsied one of his lymph nodes and installed a broviac catheter. The broviac was inserted on the left side of his chest and allows them to directly administer anything they would put through an IV, but without having to stick the child with a needle. The diagnosis: Non-Hodgkins, KI-1 Lymphoma, Stage 3.

Lymphomas in general are cancers that arise from the lymphoid system, a complex network of cells and channels that run throughout the body as a basic part of our immune system. British physician Thomas Hodgkin first diagnosed lymphoma in 1832. His lymphoma behaved in a very predictable way and has come to be called Hodgkins Disease. All other forms are called Non-Hodgkins. I believe KI-1 refers to the fact that it is an intermediate-grade, diffuse mixed small cell and large cell lymphoma. Stage 3 refers to the fact that his disease was involved on both sides of the diaphragm and not just localized on one side of the body and sometimes can also involve an organ or site that is not part of the lympatic system. Survival rates for stages 1 & 2 are 70 - 90%, stages 3 & 4 are 40 - 50%. Non-Hodgkins Lymphoma is not a children's disease.

Paradise Lost

Sandra, Jessica and I moved from DC, back to Sandra's native Philadelphia. We bought our first house on Shurs Lane in Manayunk in the Fall of 1987. Manayunk was an up and coming area outside of Philadelphia. It is hilly and rises up from the banks of the Schuylkill River. Historically, it was a big textile manufacturing area. It has a lot of brick rowhouses, old stone mill buildings and a canal. In many ways, it reminded me of a rougher version of Georgetown. We had dreams of the area becoming a Georgetown one day. Our single house on a double wide lot was built of Wissahickon Schist in the late 1800's and had six bedrooms on three stories. A great place to raise a family.

I was working as an architect downtown, Sandra was a guidance counselor at The Bridge and Jessica was taken care of at Busy Day Daycare. Their motto, "A busy day is a happy day"! Life was pretty good. Our first house, good jobs, growing family. Spencer was born in June 1989 at Roxborough Hospital. Unlike Jessica's birth, which took 36 hours, Spencer's labor and delivery was quick and easy. We attribute that to the fact that the day before Sandra and I walked the hills of Manayunk, observing the Core States Bike Race. I think that helped move things along.

Chris 32, Sandra 30, Jessica 3, Spencer 2 mos

Spencer was a healthy and happy little boy. One of my co-workers introduced me to the term "Perfect Family". Father, Mother and one child of each sex. Spencer was taken care of during the day by a woman named Cindy, she and her husband Jack took care of 4-5 kids in their house which was about a mile from ours and backed up on the Wissahickon Creek. A couple of months before Spencer's second birthday, he came down with a fever. Cindy still took care of him, it was spring time and some of the other kids were sick too. After three days with a fever we took him to our GP and pediatrician, Harry. He examined him and we mentioned that one of the other kids had just developed chicken pox. He said that Spencer was probably going to get them too and that we should come back once they started to show. At this point, we were keeping Spencer at home and Sandra and I were tag teaming days off to take care of him. We noticed that when we picked him up under his arms, Spencer cried and was uncomfortable. Feeling up into his armpits, we noticed that they were lumpy. Like he had hard peas under the skin in his armpits. When we told him about this, Harry said to bring him in again. Sandra's brother Lauren was living with us at the time and offered to drive me to the Doctor's as Sandra had our only car at work. Upon examination, Harry said that he wasn't sure what it was, but said that we should go over to Children's Hospital immediately to have it checked out.

I kept Sandra informed of what was going on and Lauren drove me over to Children's Hospital of Philadelphia (CHOP). In the emergency room, they looked him over and asked a lot of questions. Particularly about if we had pets, a cat perhaps? No, no pets. Could he have had exposure to pets? Been exposed to someones cat box? I don't think so. Well, they said, we are not sure, but we are going to need to admit him for more testing. If they had to guess, they would say it is either something like "cat scratch fever" or it could be a malignancy. I felt like the doctor had just kicked me in the stomach.